Some days are better than others. Each day is its own.
Here’s a glimpse into a random 24 hours stretch in our life on day this past week.
I get an alarm from her Dexcom continuous glucose monitor letting me know her blood sugar has drifted too low. The sound is an alarm clock because otherwise, I likely won’t hear the alert. I silence the alert and roll myself out of bed and down the hallway. We keep juice boxes by her bedside so I grab one and hold the straw up to her lips.
“Drink”, I tell her. Almost like a reflex, she has the straw in her mouth and takes some drinks of the juice.
I go back to bed myself and set an alarm for 15 minutes later, holding the phone to my chest with my finger on the button to silence the alarm so it hopefully won’t wake my husband.
The alarm sounds and I open the Dexcom app to make sure her blood sugar has gone back into range. It has, but I also managed to wake my husband.
“Is she okay?” He asks. I assure him she is, plug my phone back in and try to fall back to sleep. Some nights it’s really difficult for me to sleep. My mind starts thinking about diabetes, and grocery lists and what I need to get done at the office and did I remember to pay the mortgage?
This night, though, I am back to sleep quickly with hopes that the next time that I wake up, it’s for work and not for Dexcom.
I’m up for the day and head into her room to make sure she’s awake. She’s still sleeping, but I sit on the side of her bed and just look at her face while she sleeps. There’s times when the girls are sleeping that I can picture them when they were babies.
I wake her up and we do a fingerstick to calibrate her Dexcom. The readings are pretty close, which makes me feel confident that we will be running our day from the Dexcom in lieu of doing multiple finger sticks.
She decides that she wants to have an English muffin with egg and cheese for breakfast. I put the carbs into her pump to figure out how much insulin she likely needs, but experience has taught me she will need extra for the egg and cheese.
Based on where her blood sugar is, I tell the pump I want it to give her 80% of the insulin up front and the remaining 20% over the next half hour.
We both get ready for the day and then head down for breakfast.
Before she heads out the door to get on the bus, I check Dexcom to make sure that the food and insulin are working the way I expect them to. Sometimes she takes too long to get herself ready and the insulin will get too far ahead of the food. It’s just a quick spot check to make sure she’s good to go before she heads out the door.
On my drive to work, I get an alert from Dexcom that her blood sugar has gotten to a certain level. At a traffic light, I pull up the app and see that her blood sugar is rising way faster than I would have liked or expected based on what she ate. I shoot her a quick text to push just a little more insulin.
(This is where I need to acknowledge that I stack insulin. I wouldn’t suggest that you do it. Your Endo will tell you not to do it. There are risks to stacking insulin. I am aware of them and I have made decisions on how I manage my daughter’s care based on my experience with her. If you aren’t clear what stacking is, ask your Endo about it. My Endo knows how we manage and she’s comfortable with what we do for our daughter.)
It’s been three hours since she did her initial insulin for breakfast so I check her Dexcom app. I shoot her a quick text in class to do a correction.
We manage her care while she’s in school via texting. The school recognizes her iPhone and apple watch as medical devices and allow her to have access to them during class. The kids in her school are allowed to carry their phones, but they aren’t allowed to use them unless the teacher has given the okay. Because we use her phone to manage her care, she can text me about diabetes any time she needs to.
It’s been critical to how we manage. First and foremost because I know what my daughter needs and I am not comfortable with anyone else making those decisions for her. We use the pump technology and frequently run temp basals, extended boluses and sometimes we don’t do what the pump suggests because experience has taught us she needs more or less that what the program says.
There was a substitute teacher who didn’t realize why she was texting in class. She said something to my daughter about it and my daughter just responded, “I have permission from the nurse, it’s in my 504.”
Lunch is in about 15 minutes and we want to get some insulin going. She buys school lunch most days. Based on where her blood sugar is and what it is doing, we decided how many carbs we want to run a prebolus for (for example 15 or 30 carbs) and if we want to do it straight or run it as an extended bolus.
She carries carbs on her so if there’s an emergency or some reason that lunch is delayed, I know she can have some juice, a protein bar or something to cover the carbs that we’ve pre-bolused for.
She sends a photo of her school lunch. I figure out how many more carbs she needs to cover and send her a text.
Dexcom alerts that her blood sugar has hit my high threshold. I check the app but decide not to do anything in the moment. I plan to just keep an eye and see what happens.
I recheck the Dexcom app and decide to take no action.
Another spot check of the app to see what’s going on and a quick text do more insulin.
I have a daily alarm to check Dexcom app before she gets on bus. Even though I just had her do a correction, I double check the app just to make sure I’m comfortable with where she’s at.
She’s home from school and lets me know she’s doing some insulin for an after school snack. I have no idea what she’s eating, but I appreciate she let me know that she is having a snack and taking care of her insulin for it.
While I’m making dinner I call her down to figure out how hungry she is. I get an idea of what she is going to have for dinner and have her start the insulin for dinner.
While her blood sugar is pretty stead, we do a fingerstick to calibrate her Dexcom. This is only the second fingerstick of the day, even though we’ve done blood sugar corrections a few times during the course of the day.
(Side note: when this was originally written, she was using an older version of the Dexcom. We no longer do fingersticks to calibrate the device.)
Dexcom alerts that her blood sugar is rising. Since it’s been a couple of hours since we ate, I push more insulin.
She’s settling in with a book and I check Dexcom to make sure the insulin we did earlier is working the way I expect. Her blood sugar is still rising and I realize I didn’t do enough so we push some more insulin.
She’s been asleep for a while, but I need to reprogram her settings. We’ve been having to do too many corrections and I know she needs more insulin for her food. I suspend her pump, make the changes that I want to try and turn the pump back on.
I check her Dexcom app and push one more blood sugar correction.
I kiss her good night and whisper in her ear how much I love her.
On one hand, it feels like a lot. We are constantly checking and monitoring and communicating and thinking and planning and reacting . . . .
On the other hand, most of the day, it was just spot checks, quick decisions and things that we can do without letting it consume us.
It wasn’t even a particularly bad day. It was just a day. Tuesday, perhaps, or maybe Wednesday. It didn’t go as well as I would have liked, but it’s over now …
and tomorrow is another day.